If you meet me for the first time, you would hopefully think that the person in front of you seemed friendly enough. You’d be faced with a wide grin, a slightly awkward posture and a bag filled with syringes and sweets. This is the information with which you would make your judgement. You might catch the smile slipping occasionally, as though perhaps a battery is starting to fail, but, unless you caught me on a bad day, I think you’d remember that I generally smile, a lot. Normally no one notices me however, as it is so rare for me to be anywhere without my far cuter side kick, Dominic. I’m merely his plus one. Imagine the possibilities then when the opportunity came up for me to attend the Brilliance in Blogging awards, by myself. No wheelchair access to think about, no medical kit needed, I just needed to worry about regular things, like what to wear, how to drink alcohol without falling over and how to walk into a room with 500 opinionated, smart and quick witted ladies (and the odd token man- sorry lads) and not look like complete arse. The thought of it was terrifying.
And so on Friday 22nd June 2012 the 36 year old version of me stood, slightly knock kneed, staring at a sea of very loud, very confident looking bloggers, wondering how I used to do this so often, you know, before responsibilities ate away the available finances and willingness to socialise. These days, once all the nightly care is done for Dominic, I throw myself onto the well sculpted bum mark on the sofa and barely move until I either count the hours there are left of possible sleep and mentally tell myself off again for staying up too late, or some machine alarms at me. The thought of not only going out, but also being soooooocchable is a horrifying one when you’re pretty sure that you don’t have the energy left to reach over and take the last bit of Toblerone (but you somehow manage it) most evenings. I’m not entirely sure if the fact that I am the only one who can carry out all of Dominic’s medical care is the actual cause of the slow corrosion of my sociability or just a convenient excuse for it.
In the early days, when Dominic was at his most medically unstable and I was a single mother also trying to care for a 4 year old and a 2 year old (who were desperately fragile and in need of stability because of the turmoil their lives had been thrown into), going out just wasn’t an option. Apart from times that I was forced to leave the house to deliver various children to school or preschool, I withdrew from everyone, being around other people was just too much work. I felt the need to reassure the concerned friends about how I was coping and how Dominic was doing. Having to worry about other people’s feelings was emotionally exhausting. Don’t get me wrong, smiling and laughing felt natural when I was out of the house and away from the realities that we lived amongst, and it was probably the best therapy I could have had. But facing the question “…but he is going to be all right, isn’t he?” was something that I dreaded. What do you say when your heart is screaming in pain at the mere thought of the true meaning of answering “I don’t know?”. What I really wanted to do, in those dark early days, was to withdraw completely and just spend my time just trying to keep him safe. In practice I lived in a daze, lurching from one medical intervention to another occasionally wondering at what point I had stopped being a mother and started being a nurse. My interaction and awareness of outside life was entirely kept alive by Facebook, and it basically consisted of me clicking on photos that my friends had posted of their trips out together, flicking through pictures of them smiling and happy and then sobbing loudly.
I am grateful that the daily routine that Elliot and Lilia’s young age demanded I adhere to forced me to keep in touch with the outside world beyond Facebook’s filtered window of it. Because Dominic didn’t have a diagnosis I was pretty much alone, as there were no support groups or charities that scooped me up and introduced me to anyone in the same situation. We just struggled on and slowly it became our normal and I felt less lost. The Facebook pictures might still make a slow fat tear fall, but it quickly got brushed aside as a bottom was presented for wiping or a vegetarian child was about to taste their first bit of meat courtesy of the cat’s bowl. I began to treasure the precious moments my new life was giving me, gems that I may well have never appreciated had Dominic not been the child he was. I grew in confidence, started fighting to scrape together some semblance of normality for all of the children, fighting to get Dominic out of hospital, fighting to get him into school, fighting to get the house adapted, fighting to get him a wheelchair, fighting for people to realise that Elliot and Lilia suffered just as much as Dominic (I highly recommend you pause to read this about Dominic’s brother and sister if you ever doubt that siblings need more care than anyone). A lot of my life felt like a fight.
The unsociable years ticked by, and during that time I’ll admit the negatives often overshadowed the positives. I faced every parent’s nightmare when I was told Dominic would not survive and having to explain to my 3 and 5 year old that this visit to see him in hospital was to say goodbye, forever, fundamentally changed me as a mother and as a person. Our strange half life of hospital and home meant we lived with one foot in everyone else’s reality, and the other in our bubble which immersed us in long hospital stays, an abusive ex and battling with bureaucracy. But, although it may have been close at times, I survived, and with each negative we faced, our positives, however few and far between, seemed to shine more brightly. I didn’t just learn to smile through it, I was laughing. There may well have been some eye-twitching manic laughter in there at times, but I had finally accepted that this was my life and I could waste it with regrets and thinking ‘poor me’ or I could embrace it for how fabulously extraordinary it was and accept it as a gift, warts and all. Being at home with the whole family, having spent so long in hospital, was the best and most precious gift of all though, and I had no desire to leave the warm comfort of being with all my most beloved people. I embraced the unsocial git within and excepted a life at home gratefully.
I was still desperately lonely though as there was no one to talk to and we were excluded from the usual places that other mothers congregate by Dominic’s complex needs (curious toddlers and interesting tubes don’t generally mix). The internet became more and more important as a communication tool for me, and indeed it is how I met Roger, the lovely man who now keeps me company most evenings (in real life I hasten to add) and adores the kids as much as I do when they are quiet and nicely behaved. I originally started blogging again after a couple of years of silence to stop myself having to send hundreds of text messages every day updating people about how Dominic was doing when he was in hospital. But I found that as I wrote my posts writing them became more about finding my own voice than simple information sharing. Then as I slowly gained readers and I realised that what I wrote had an influence on the people that were reading the blog, I started to believe that I could positively change perceptions that people have about families like my own. I believed and still believe that the very best way of educating people is by tackling misconceptions and breaking down barriers by sharing a personal story and experiences.
And this is how I found myself entering the Britmums.com community, to start sharing my story with anyone who would listen. If you believe Isabel Allende’s inspiring TED talk Isabel Allende tells tales of passion then by sharing stories of ourselves, we can reveal far more than mere facts alone. Using an old Jewish proverb she asks, ‘What is truer than truth?’. The answer? ‘The Story’.
I hoped, when I first started tentatively negotiating my way amongst other bloggers, that by sharing our story with people beyond the special needs community that I was using the most powerful tool I had to bridge the gap between the special needs and the parenting worlds. Stories have always shaped the way we see our world, and I hope that I can show that our family laughs and cries and loves and fights for the same fundamental truths as any family, despite the obvious outward differences. We all want our children to be happy and safe and loved and accepted, just like other parents all over the world. The difference is simply how we choose to define ourselves.
Writing and sharing my family’s story has taken me on an amazing journey, the highlights of which have come in two different ways. Firstly was when I started to hear back from the people that were reading my posts. Many messages made me laugh, some made me feel less alone, others made me cry as I felt the isolation and fear and relief that was poured into the messages. Secondly was when I found out that I had been nominated in the ‘Change’ category of the Britmums’ Brilliance in Blogging awards. It was possibly the biggest compliment I’d ever had, and when I then found out that the lovely people who read my blog had then voted for me to become a finalist, I was stunned, and enormously touched. I finally let myself believe that I had made a tiny ripple in the sea of voices out there, and even though I may still be whispering with my little blog, I knew that I had started to be heard.
As delighted as I was to have become a finalist, watching the banter on Twitter about the approaching Britmums Live blogging conference and the included award ceremony had the opposite effect than it probably should have done. I didn’t feel part of the community involved with Britmums Live, exactly the opposite, I felt like the one stood by the door holding a watermelon gawping (if you have never seen the film Dirty Dancing, to be honest, this metaphor is going to be utterly wasted on you). I blamed myself entirely for my lack of confidence as social media is a forward moving communication tool and as I would disappear for lengths of time as we hopped from one crisis to another at home it was unsurprising that I spent most of my time clawing myself way back from the depths of anonymity before dropping from view again. Despite some short bursts of concerted effort (where I have steadfastly ignored my children’s pleas of starvation to interact with the blogging community) I have had to be content with the fact that a) I am rubbish at self promotion and I watch other bloggers with open-mouthed awe at their combined skills of oozing apparent modesty whilst carrying out slick PR campaigns and b) ; that if I want my children to eat and have their hair brushed (actually that’s a lie, no one wants my boys to have their hair brushed, if you do it actually sticks outwards in a big bouffant and looks hideous) I shouldn’t waste my time feeling sad that I have to be an outsider of something that I will never be able to invest the time to truly belong too.
Attending the Britmums Live conference would have, of course, been the obvious thing to do in order to get to know the other bloggers and boost my confidence. However, leaving my three children for a whole two days and a night was never going to remotely be possible when you factor in the complication of me being Dominic’s sole carer. I might manage the odd hour here or there with Roger looking after him or the lady I pay for with our direct payment money but then none of his on-going medical care gets done. A drop in blood sugar, or a blocked bile bag gets missed, sometimes it’s only enough to cause minor problems, but other times it’s serious enough to be life threatening. Added to the fact that his wonky system has been getting steadily wonkier of late, and we’re (still) waiting for a date to see the surgeons to get it resolved and factoring in time to be social isn’t allowed to be top of my priority list. However, it turns out that being nominated for an award did me a huge favour. Roger, whose default feeling towards the blog is one rather akin to a sibling rivalry (he resents the time it steals me away from him, which is fair enough), so I generally blog after everyone has gone to bed (I must admit it does sometimes feel like I’m having an illicit affair with my laptop) to maintain the peace. However he suddenly seemed to gain a little more respect for the time that I spent tapping away at my computer with news of my nomination, then selection for the finals. A bemused Roger actually uttered the words ‘you should go’ when I was explaining to him that the ceremony was on the Friday night of the conference. I tried to put it out of my mind as practically it wasn’t possible, but it proved difficult as excitement grew on Twitter and spread through the blogs as the weekend quickly approached.
It was Jenny from Cheetahs in my Shoes who first told me that the finalists could go just for the awards ceremony. Now that was something that I thought I might be able to do. I toyed with the idea for a few days before broaching it with Roger, wondering if my rusty social skills could handle being in a room with 500 people who didn’t have a clue who I was, let alone what Just Bring the Chocolate was all about (which is not chocolate just to complicate things). Luckily Jenny is spectacularly good at being a social media goddess, and, without thinking about it too much, I agreed to go, vowing to hide behind Jenny’s trouser legs, hoping that she would perhaps be kind enough to sacrifice her whole evening of fun to simply trail around with me muttering who everyone is and what their blog is all about in my ear. You’ll be glad to hear that she has a whole lot more self worth than that and did an admirable job of getting me to the venue, did a couple of turns around the wrong part of the Brewery with me before we found where everyone else was and she slipped away to be utterly brilliant somewhere.
I was busy being less brilliant as it suddenly dawned on me, facing 500 (ever so slightly drunk) women that my social skills were about as stale as Keith Harris’s ventriloquist act. Trust me, I am no wallflower, but turning up an event when it has not only started, but got into full swing and all the guests have shaken off their nerves and are now bosom buddies is a bit like walking into gym class at school only to discover that everyone has already paired up and there is an odd number in the class that day. I stood there scanning the room of strangers looking for someone that not only I recognised, but also that might have a teensy clue who I was too. Deep breath, yank enormous spandex knickers out of bum crack, grab drink and put one foot in front of another was the approach to mingling that I settled on in the end. Whilst I’d like to think that I glided across the room looking both elegant and mysterious, I fear that actually I shuffled like the man-servant Igor, grimacing with the effort of not looking nervous and screwing up my eyes trying to decipher name tags pinned to breasts in the dim lighting. A few women turned around as I approached, looked at my face, then at my name tag, then back at my face and then (unsurprisingly) turned back to their conversations. I don’t think crossing the room like I was auditioning for a part in the Thriller video helped the other bloggers instantly warm to me.
To be honest, I felt really awkward just butting into a group of chattering women, but not just your normal, slightly uncomfortable awkward, think ‘Baby’ walking-into-a-room-of-gyrating-strangers-carrying-a-watermelon awkward (yes I apologise, another Dirty Dancing reference, click the link if you have no idea what I’m talking about)… not saying that the Britmums’ bloggers had drunk enough of the free wine to be at the point of actually re-enacting any moments from the film (I believe that happened later on in the evening), but I felt about as at home as Baby’s modest cardigan did amongst the sweaty hot pants of the dirty dancers.
I smiled weakly at the strange faces and once again scanned the crowd for any sign of a face that would fire a neuron and find a connection. “Crap”, I thought. “No one”. Everyone else seemed to be amongst friends, except perhaps the nearly naked waiters who walked amongst sharks (ladies, you know who you are…). And then I saw a face I recognised. I could have kissed her for having had an avatar that showed her face looking like it actually does, you know, in real life. Kate from Kate on thin ice happened to be standing there looking like a slightly more clothed version of her twitter avatar. I made a beeline towards her and said hello. I have no clue if she had any idea who I was, but she was friendly and polite, which is something that I will always be grateful to her for. It turns out that the two ladies standing with her I recognised from their name tags. Laura from Chez Mummy and Hayley from Down side up happened to be two people who I had actually talked to in a virtual sense- cue relief (mine), patience (theirs) and happy conversation for the all too brief period before the awards ceremony was due to start.
I sat some way towards the back having followed Jenny like a puppy dog as soon as I saw her again (but without leaving any highly inappropriate puddles anywhere, I promise). Katy Hill did a great job introducing each of the categories, relieving the tension between each announcement with funny anecdotes of her experiences since becoming a mother. I applauded as loudly as my hands would let me as the winners started being announced, sometimes for bloggers that I had heard of, other times for ones that I vowed I would get to know. My category came and went, I didn’t win, but genuinely (really I’m not just saying that so I can pretend to be a good loser) didn’t mind as I thought that the judge made the right decision with the Change category winner. Huge congratulations to Special Needs Jungle . Tania is dedicated to providing information to help other people by providing a resource for parents going through the statementing process and should be applauded for the amount of work and effort she puts into it. As she mentioned in her acceptance speech, she is currently highlighting the plight of children in care, which I’m sure she would appreciate you taking the time to read and then share. I was especially pleased that she won for another reason though, she demonstrates the power bloggers have when they look towards the bigger picture and don’t just focus on promoting their own blogs. Plenty of people claim to be raising awareness, but then do no more than promoting their own posts. I’m not sure if it’s simple competitiveness that drives it, but it undermines the power that bloggers have if they support and promote other people’s work as well, which is something that Special Needs Jungle makes a point of doing.
The point that struck me the most as the awards drew to a close was the connection that the audience had with the winning blogs. It’s easy, when you hide behind a screen, to forget that real people are making an emotional connection with what you write. All the winners seemed genuinely moved by the reaction of the cheering audience to their names being announced. I like to think that this has to be because blogs have a way of touching their readers that surpasses the abilities of newspapers and other sources of information available to us, because they share a story. I started to feel like I was standing there holding my watermelon again when I considered that I had been nominated amongst these women. I’m rather glad I didn’t have to experience the polite applause while women mouthed (who is she?) to the person sitting next to them that would have happened had my name been called. I felt privileged and insignificant at the same time.
The highlight of the whole night for me, and this should not undermine how much work had gone into organising the event, has to be the meal that Hayley (Downs Side Up), Steph (Stephs two girls), Jenny (Cheetahs in my shoes) and Ren (Fabulicious Food) and I went for after we were eventually kicked out of the venue for loitering. I had finally spotted Steph (two girls) and Steph (Was this in the plan?) as the ceremony was ending and had a chance to say hello after everything was finished. Steph (the Was this in the plan? one) had to go home to the family, but the rest of us went for some lovely food and to talk. Poor Ren got stuck with us talking special needs (including my favourite soapbox subject at the moment the Welfare Reform) and it was amazing to see how different people’s experiences are depending on what diagnosis their child has and where they live. A truly lovely evening.
I travelled home that night tired and happy, so I couldn’t explain the mixture of emotions I felt the next morning. It wasn’t until a couple of days had passed and I had read the posts written about people’s experiences at Britmums Live and the excited conversations amongst attendees on twitter that I finally managed to put my finger on what it was that eating away at me…
I was jealous.
I was horrified at myself for quite how disappointing this realisation was. Surely at the ripe old age of 36 I was above pathetic, childish jealousy? Apparently not. If I could have sat myself on the naughty step, I would have done (I think the dog did an excited wee there when Roger walked through the door earlier on this evening which is what put me off the idea). I know that the best way for me to understand how I really feel about something and to recognise why I feel like I do, is to write about it. So in bits and pieces, as time has allowed, I have sat and written about what lead me to this rather unattractive state of mind. Looking back at what I’ve written up until this point, this is what I have concluded:
1. I am an outsider in the blogging community and can’t expect to be anything but an outsider. You ultimately get back what you put in and my variable situation at home means that I can disappear from the internet for days at a time because my family needs me.
2. And that’s ok.
3. I watched the comments and posts roll onto the internet about what a great time everyone had at Britmums Live and what great friends they’d made and felt like an outsider pressing my nose up against the window. I had accepted becoming an outsider in almost every other part of my life, but it seemed a bitter blow that the same was to be true of this part too. The reason I was jealous was because seeing what I had missed made be wish for a simpler life. You know, the sort of life that can be handed over to someone else for a weekend. Each post and tweet served to remind me of another missed opportunity.
4. That a life spent lamenting what you don’t have, and the opportunities that you have missed means that you forget to see the amazing things that you do have right in front of you. Taking my nose off the window pane and stepping back to get some much needed perspective, I know that, given a choice, I would choose the life, the family and the opportunities that I have now without hesitation. My life is what it is and there is a reason that I smile so much, I know that despite everything, there is a greater joy to be found in just a second of feeling a tiny pair of arms snake their way around your neck and pull you close so a quiet voice can whisper ‘I love you mummy’ than there ever will be, for me, in chasing opportunities, however wonderful they seem. I have to thank the wonderful charity Post Pals for reminding me of that, all too poignantly, on Saturday-
5. I didn’t realise how precious my blog is to me. It represents the only thing in my life that I do just for me, it not only holds precious memories, it gives me a voice, and a voice that the Brilliance in Blogging awards made me proud of.
6. That the wider community, outside the bloggers network, has moved me to tears with the comments, emails and messages that they have been kind, and brave enough to send to me. To lose focus of that is to lose focus of the point of me sharing some of the happiest, weirdest, funniest and saddest moments in my life.
7. Blogging has afforded me opportunities that I doubt would have come about otherwise. It’s brought me closer to being able to make real steps towards changing the way parents of undiagnosed children are treated when they leave the consultant’s office, it has helped me get families in touch with other families in the same situation as them and has lead to me being invited to sit on the advisory panel for SWAN UK, a project I often talk about which is the only one out there supporting the parents of undiagnosed children. It was a privilege to be asked.
8. Blogging has helped me to not become the scary special needs mum that you have to be uber careful not to offend. I guess I’ve gone from being ‘just’ the-mum-of-the-amazingly-cute-kid-in-the-wheelchair in the school playground to being just the-mum-that-writes-about-being-the-mum-of-the-amazingly-cute-kid-in-the-wheelchair. Little steps.
9. My quirky family has helped me stand back and remind myself that there is beauty in imperfection. Life isn’t perfect, but it’s far better for the lumps and bumps and flaws. It’s made me laugh when I’m sad and cry when I’m happy. It’s made me the person I am today.
10. Living the life I do and then blogging about it has lead me to you, and hopefully now, if we meet in person, you won’t find yourself wondering why I smile so much, or why I sometimes write posts about how I am jealous of other people’s (although I don’t intend to make a habit of it I promise) just to prove to myself that in actual fact I wouldn’t change mine for the world.
And with that I would like to thank the Britmums team for bringing together such a great bunch of women and men, and for allowing me to find my inner bitter and jealous hag (that I would probably like to pretend doesn’t exist), but also prompting me to go on a mini journey to drop her off again. Life has a funny way of rebalancing everything and while I think it has been a positive process realising how important my blog is to me, I recognise that because life can be so busy, it’s something that I might have to fight to protect to ensure that I don’t lose the one thing I do for myself amongst the long list of must-dos for other people. The next step will be learning to not feel guilty about it.
If I ever needed a visual reminder of what is important in life, then it couldn’t have presented itself in a more heartbreaking way than watching the balloons float away, one by one, at the Post Pals party on Saturday, and hearing the names of the much loved children that have passed away being called out as each balloon was released. I kissed the sweat soaked head of my little boy that night knowing that while I sometimes wish I could follow all my dreams, right now I’m certain I’m in the place that I need to be and more importantly, I’m in the place I want to be. I have come full circle, and I am looking forward to seeing what happens next.